rom the first known cases of the HIV/AIDS epidemic
in 1981 until the mid-1990s, most people diagnosed with
HIV faced death within a few years, if not sooner. Yet with the
advent of effective anti-retroviral treatments—and because
of the extraordinary contributions of courageous advocates,
scientists and clinicians—HIV has become a more manageable
chronic illness, as evidenced by the increasing numbers of
older people living and aging with HIV. Research estimates
predict that 50 percent of people with HIV in the U.S. will be
age 50 and older by 2015—and by 2020, more than 70 percent
of Americans with HIV are expected to be age 50 and older.
However, the successes of new treatments and increased
longevity for people with HIV have brought new challenges to
the proper prevention and care of older adults with HIV, many
of whom are LGBT and people of color. Research continues
to show that older people with HIV in their 50’s and 60’s have
as many age-related comorbidities as people without HIV
who are much older. The large-scale realities of aging with
HIV are insufficiently studied and there exist few prevention
campaigns, clinical guidelines, demonstration projects or
training initiatives aimed at older adults with HIV, especially
for older people of color and LGBT older adults.

Moreover, older adults with HIV are often omitted from major
legislation, policy initiatives and programs—from the White
House Conference on Aging, to the Older Americans Act
and the Ryan White CARE Act, to the Medicaid expansion,
and more. Left unaddressed, generations of older adults with
HIV will lack the supports they need to age in good health.
Recognizing that the HIV/AIDS epidemic has disproportionately
affected communities of color and LGBT people since its
beginning, the Diverse Elders Coalition and ACRIA (AIDS
Community Research Initiative of America) offer eight policy
recommendations that can dramatically improve the lives of
older people with HIV.
To learn more about the DEC’s advocacy and education efforts
on HIV and aging, visit diverseelders.org

INTRODUCTION

4 | ISSUE BRIEF

1. Prioritize HIV and aging at the 2015 White
House Conference on Aging to ensure that the
conference’s recommendations emphasize
older adults with HIV, including people of
color and LGBT people.

DID YOU KNOW?
Though African
Americans represent
approximately 12 percent
of the U.S. population,
they accounted for an
estimated 44 percent of
new HIV infections in
2010. Similarly, Latino
people represent about
16 percent of the U.S.
population but account
for an estimated 21
percent of new HIV
infections in 2010. Men
who have sex with men
(MSM) accounted for
79 percent of new HIV
diagnoses in 2011.1

Since its inception, the White House Conference on Aging has
been held every decade, offering an opportunity for communities
around the country to reflect on the most pressing issues facing
older Americans. The conference has historically sparked major
legislative initiatives and shaped national aging policy for the
ensuing decades. The upcoming 2015 White House Conference on
Aging provides a key opportunity to address the contemporary
issues facing older adults with HIV, many of whom are LGBT and
people of color. Emphasizing these issues will ensure that the
conference speaks to major demographic shifts in this country,
including the growing number—and needs—of older people,
people of color, LGBT older people and the first generation of
people to age with HIV/AIDS.

RECOMMENDATIONS: The White House Conference on Aging
should include tracks focused on the socio-economic needs of older
adults with HIV, including LGBT elders and elders of color, as well as
their many policy barriers. The various policy recommendations
offered throughout this brief should be integrated into the official
recommendations that emerge from the 2015 White House
Conference on Aging.

2. Designate older adults with HIV as a
population of “greatest social need” in the
reauthorization of the Older Americans Act.

The Older Americans Act (OAA) is the country’s largest vehicle
for funding and delivering services to older people in this country;
recent estimates show that OAA provided $2.3 billion to aging
services nationwide. Yet despite its profound importance to
millions of older people, few OAA resources are designated
specifically to address older adults with HIV, LGBT older people,

"In the next few years, half of all people living
with HIV in this country will be over 50 years
old. The reported incidence of HIV/AIDS among
Asian Americans and Pacific Islanders (AAPIs)
in general is relatively low, but because the
data is not disaggregated, we do not know
the impact of HIV/AIDS on Southeast Asian
Americans (SEAA), much less SEAA elders.
We do know that SEAA elders are often
linguistically isolated and experience high rates
of poverty. There is also a high level of stigma
associated with HIV/AIDS across AAPI
communities, resulting in low rates of testing.
Culturally and linguistically competent outreach
is crucial to raise awareness and prevent
increased rates of HIV in our communities."

ISSUE BRIEF | 5

QUYEN DINH, Executive Director
Southeast Asia Resource Action Center

or older communities of color. Older adults with HIV face a variety
of challenges that place them in “great social need,” including
stigma and discrimination related to HIV and aging (as two
factors); heightened health challenges related to the virus and to
HIV medications; and a general lack of age-appropriate, HIVrelated supports from practitioners across various fields. LGBT
older people and older people of color face the added challenges
associated with multiple forms of discrimination.

RECOMMENDATIONS: Congress should reauthorize and fully

fund the Older Americans Act (OAA)—and explicitly include
older adults with HIV in the OAA’s definition of “greatest social
need.” Congress should also specify LGBT older people in the
OAA’s definition of “greatest social need” and prioritize culturally
and linguistically competent supports for LGBT elders and older
people of color.

DID YOU KNOW?
Half of all Americans
diagnosed with HIV will
be age 50 or older by
2015; that proportion
will rise to more than
70 percent by 2020.
In addition, adults age
50 and older account for
15 percent of all new
HIV/AIDS diagnoses and
29 percent of all people
living with AIDS.2

6 | ISSUE BRIEF

DID YOU KNOW?
From 2007 to 2009,
the estimated number
of AIDS-related deaths
among older adults age
45 and older increased
27 percent. In 2009,
48 percent of those
deaths were African
American and 16 percent
were Latino.3

3. Provide sufficient resources for the Centers
for Disease Control and Prevention to address
HIV infection among older people through
culturally and linguistically appropriate
prevention campaigns and routing testing.

According to the Centers for Disease Control and Prevention (CDC),
research from 2013 shows that people age 50 and older represent
one in six new HIV diagnoses. This research also shows that about
half of this population is concurrently diagnosed with AIDS,
meaning that their HIV disease has advanced to a stage where the
health complications and treatment interventions are more severe
and complicated. It also means that many older people were not
tested or diagnosed early—in part because health providers
mistakenly assume that older people are not sexually active, and
because older people might not seek HIV testing for fear of
discrimination or because of a general lack of information
regarding its importance. While CDC guidelines recommend

“There is a limited amount of research on the
numbers of older American Indian and Alaska
Native (AI/AN) elders living with HIV/AIDS
today. We know other factors such as the life
expectancy of an AI/AN elder is shorter than
for other races in the United States. It is also
known that AI/AN access to health care is
poor. Many Older AI/ANs see the devastation
HIV/AIDS can cause and are talking out loud
about the disease and are open to learning
more to support their communities.”
RANDELLA BLUEHOUSE, Executive Director
National Indian Council on Aging

ISSUE BRIEF | 7

routine testing for people up to age 65, many providers are
unaware of these guidelines. Further, these guidelines leave out
people over age 65 who could benefit from regular HIV testing.
Finally, few national or regional HIV prevention campaigns
explicitly target older people, especially older people of color and
LGBT older people.

RECOMMENDATIONS: CDC should be appropriately funded to

dedicate resources to prevention campaigns and interventions
that target older people age 50 and older. To ensure that these
campaigns reach older people of color and LGBT older people,
these campaigns should place a specific emphasis on working with
organizations that engage these populations to ensure cultural
and linguistically competent messaging, representations and
implementation. In addition, the CDC and the United States
Preventative Services Task Force should re-examine its testing
recommendations to encourage regular HIV testing among people
older than 65 and to better promote these guidelines among
clinicians and the broader public.

4. Improve data collection and reporting
from the Centers for Disease Control and
Prevention on HIV and aging to better address
the epidemic’s course among older people.

In early 2013, the Centers for Disease Control and Prevention
(CDC) released a landmark HIV surveillance report that tracked
HIV infection among adults age 50 and older. The CDC should be
commended for tracking and reporting HIV infection data in new
five-year increments between age 50 and age 85; this data will
help track the epidemic’s course and inform interventions for
older people with HIV across the “older” age spectrum. However,
this data has not been integrated into the CDC’s routine
surveillance reports for people younger than 50, which limits the
ability to readily compare data across age, gender, race, ethnicity,
sexual risk and other variables. Further, the available data on HIV
testing, and AIDS-related morbidities and mortality rates among
older people is limited, especially in regards to LGBT older people
and older people of color.

DID YOU KNOW?
Research shows that
31 percent of African
Americans adults have
never been tested and
more than 70 percent
report not being offered
an HIV test by their
health care providers.
In addition, doctors are
less likely to ask older
patients about their
sexual activities, likely
due to discomfort as
well as a mistaken belief
that older people are
not sexually active. One
study found that only
19 percent of adults age
50 and older reported
speaking with their
medical providers about
HIV/AIDS.4

8 | ISSUE BRIEF

RECOMMENDATIONS: The CDC should integrate its new five-

DID YOU KNOW?
Among adults, people
of color are more likely
to be uninsured than
whites (27% vs. 15%),
with Latino people
showing the highest rate
of uninsured people
(33%). Overall, more
than half (53 percent)
of uninsured people of
color have incomes at or
below the new Medicaid
expansion limit.5

year incremental data for people age 50-85 into its routine HIV
surveillance reports on people age 49 and younger. The CDC
should also provide data on HIV testing rates among older people,
as well as the total number of HIV tests conducted annually among
people age 50 and older. (As one example, data that shows the age
at which HIV infection occurs, as opposed to when HIV is detected,
would be particularly informative.) Finally, the CDC should provide
better data on AIDS-related morbidities and mortality rates, given
the high rates of AIDS among older people. All of this data collection
and reporting should include breakdowns by race, ethnicity,
sexual orientation and gender identity to better capture the
realities of older people of color and LGBT older people with HIV.

The Affordable Care Act (ACA) has expanded health coverage for
millions of people nationwide, including older people with HIV,
many of whom are people of color and LGBT. For people with HIV,
the ACA offers important protections; for example, people with
HIV can no longer be denied coverage or charged more because of
their HIV status. People with HIV rely heavily on Medicaid: people
with HIV are three times more likely to be covered by Medicaid
than the general population, due in large part to high disability
rates, multiple chronic conditions and the low-income realities
that qualify many people with HIV for Medicaid. Unfortunately,
only 27 states (including Washington, DC) have adopted the
Medicaid expansion, leaving many people with HIV without better
health coverage; several of these states have high new infection
rates, low rates of overall insurance coverage and troublesome
racial health disparities. New research from the Kaiser Foundation
has found that there are 200,000 people with HIV who could gain new
coverage under ACAâ&#x20AC;&#x201D;through Medicaid expansion and the state
Marketplacesâ&#x20AC;&#x201D;if all states were to expand Medicaid and if all people
with HIV were in care.

ISSUE BRIEF | 9

RECOMMENDATIONS: All states should adopt the Medicaid

expansion offered through the Affordable Care Act. The Medicaid
expansion and the state Marketplaces should ensure that older
adults with HIV have access to robust HIV medication coverage
as part of the Essential Health Benefits packages, as defined by
the Center for Medicare and Medicaid Services (CMS). State
government leaders and health reform advocates should partner
with organizations working with older communities of color and
older LGBT people to ensure that Medicaid expansion efforts
engage the diversity of people aging with HIV.

“SAGE’s vast experience with LGBT older
people around the country has shown us
the profound impact that HIV/AIDS has had
on their lives. Many LGBT older people are
longtime survivors and now struggle with
both the challenges of aging with HIV and
the unfortunate stigma that’s too often
present in the aging and long-term care
system. Others are newly infected, which
speaks to the importance of prevention
campaigns aimed at older people. And many
helped pave the way for the LGBT rights we
are witnessing today, including remarkable
wins for HIV/AIDS that helped make HIV a
more manageable, chronic condition. We
must band together to ensure that all older
people with HIV, including LGBT people, can
live out the dreams they have envisioned.”
MICHAEL ADAMS, Executive Director
SAGE (Services and Advocacy for GLBT Elders)

DID YOU KNOW?
More than 70 percent
of Ryan White HIV/
AIDS Program clients
are people of color and
in 2010, 39 percent
of Ryan White HIV/
AIDS Program clients
were MSM (men who
have sex with men).
In 2013, 66 percent of
AIDS Drug Assistance
Program (ADAP)
recipients were people
f color and 54 percent
were older adults.6

10 | ISSUE BRIEF

“Hispanics represent 17% of the U.S. population yet
comprise more than 21% of all new HIV infections.
At three times the rate of HIV infection as their White
counterparts, HIV presents a serious public health
threat to the Latino community. Moreover, 16% of
all new HIV infections annually are among Hispanic
older adults. Poverty, limited access to health services,
and social isolation among elderly Latinos are
roadblocks to effective HIV treatment. Additionally,
cultural gender norms—such as machismo and
homosexuality-related stigma—can keep HIV positive
Latino seniors from obtaining the necessary social
support vital to effectively managing their illness.”
DR. YANIRA CRUZ, President and CEO
National Hispanic Council on Aging

6. Increase funding for the Ryan White
Program, ensuring that millions of older
people receive the medical care and support
services they need.

The Ryan White Program continues to serve as a critical support
for people with HIV, including people age 50 and older. The
median age for people with HIV is 58, which means that many of
them are not eligible for Medicare or for other services funded
through the Older Americans Act. Many older people with HIV rely
on Ryan White-funded programs for a host of services, including
the AIDS Drug Assistance Program (ADAP), which assists with the
cost of HIV medications, as well as transportation support and case
management. Unfortunately, the Ryan White Program has been
essentially flat-funded for the last decade despite the ongoing

ISSUE BRIEF | 11

severity of the epidemic, especially among older people, people
of color and LGBT people. Given that many states have opted to
not expand Medicaid, and many of those states have been ravaged
by the AIDS epidemic, Ryan White remains vitally important to
the health and support needs of older people with HIV.

RECOMMENDATIONS: Congress should fully fund the Ryan

White Program or, at a minimum, fund the program at the level
requested in the President’s Fiscal Year 2015 Budget.

7. Increase support for National Institutes of
Health research on HIV and aging among
diverse populations to better understand the
epidemic among older adults with HIV.

Older adults with HIV remain profoundly understudied as a
population in bio-medical, clinical and social science disciplines.
The general lack of research hinders the treatment and care
of this population, especially among groups that have been
disproportionately impacted by HIV such as LGBT people and
people of color. An April 2011 gathering of HIV scientific experts—
the NIH Office of AIDS Research Special Working Group on
HIV and Aging—affirmed these concerns and noted various
priority research areas, including multi-morbidity management,
behavioral health needs and caregiver support resources. The need
to study and understand the realities of older adults with HIV
grows as rapidly as the population.

RECOMMENDATIONS: The National Institutes of Health (NIH)

should be appropriately funded to support more research on
HIV and aging, including research on women, LGBT people and
various communities of color. Research should look closely at
differences within more marginalized and less studied subgroups
of these populations (e.g. transgender people, Southeast Asian
communities). Additionally, NIH should support research in the
priority areas identified by the NIH Office of AIDS Research
Special Working Group on HIV and Aging, including but not limited
to multi-morbidity management, behavioral health needs and
caregiver support resources.

DID YOU KNOW?
On average, older adults
ages 60 and older have
more than two chronic
diseases. An ACRIA
study of 1,000 HIV
positive adults age 50
and older found that
91 percent had one
comorbidity and 77
percent had two or
more comorbidities.
The most common
comorbidities in that
study were depression
(52%), arthritis (31%),
hepatitis (31%),
neuropathy (30%) and
hypertension (27%).7

12 | ISSUE BRIEF

8. Develop U.S. Department of Health and
human services treatment guidelines for the
clinical care of older people with HIV—and
support demonstration projects and training
that improve HIV care.

DID YOU KNOW?
A recent HIV care and
treatment study showed
that Latinos diagnosed
with HIV are less likely
than whites to be linked
to care, retained in care,
receive antiretroviral
treatment and achieve
adequate viral
suppression.8

A 2012 report, Recommended Treatment Strategies for Clinicians:
Managing Older People with HIV, from the AIDS Community
Research Initiative of America (ACRIA), the American Academy of
HIV Medicine and the American Geriatrics Society called brought
attention to the importance of developing clinical guidance for HIV
practitioners for a growing population of older adults with HIV.
According to the report, effective HIV treatment has extended the
lives of people with HIV, yet the combination of the virus and
HIV treatment (as two primary factors) has also led to increased
comorbidities among people with HIV as they age, including
cardiovascular disease, kidney impairment, neurocognitive decline
and more, which requires “the attention and expertise of multiple
health care domains and their providers.” This trend also calls for
widely adopted clinical guidance for people treating and working
with people with HIV in areas such as detection and screening for
HIV, sexual health, depression, substance use disorders and many
other areas outlined in the 2012 report. Finally, proper training and
tested interventions are crucial to ensuring that practitioners are
effectively working with the full diversity of older adults with HIV,
including older people of color and LGBT elders.

RECOMMENDATIONS: The U.S. Department of Health and

Human Services should issue treatment guidelines for the clinical
care of older people with HIV, with specific attention to cultural
and linguistically competent care when dealing with older people
of color and LGBT elders. The 2012 report referenced above
provides an important starting point for these guidelines.
Additionally, the Health and Human Services Administration
should support targeted demonstration projects and training
initiatives for older adults with HIV, with an emphasis on the
unique needs of older people of color and LGBT elders.

ISSUE BRIEF | 13

â&#x20AC;&#x153;As in many other populations, HIV/AIDS in
the AAPI community can be a highly
stigmatized topic, resulting in underreporting
and a lack of accessible information and
education. In addition to the cultural
stigma, language barriers and lack of access
to health care, may also contribute to the
underreporting. While the total number of
reported AIDS cases has generally declined
over the past five years for the White
population, the total number of reported
AIDS cases has increased for Asian
Americans. Additionally, Asian American
women are 20 percent more likely to be
diagnosed with HIV than White women.â&#x20AC;?
CHRISTINE TAKADA, President and CEO
National Asian Pacific Center on Aging

The Diverse Elders Coalition (DEC) advocates for policies and
programs that improve aging in our communities as racially and
ethnically diverse people; American Indians and Alaska Natives;
and lesbian, gay, bisexual and/or transgender people. Together,
we are made up of five national organizations representing a
growing majority of millions of older people throughout the
countryâ&#x20AC;&#x201D;racially and ethnically diverse older adults; LGBT older
adults; and poor and low-income older adults. We have come
together to promote policy changes and programmatic solutions
that respond to this demographic shift and will remove the
barriers facing our communities. We envision a world where all
older adults can live full and active lives as they age.